Monday, May 26, 2014

Week 5 of my cancer fight

Last week was a big week. first Yervoy (immunotherapy) Wednesday and Gamma Knife radiation treatment to the old brain tumor site on Friday. My head is a little more FrakenFine this week with the holes in my forehead from mounting the frame. My next treatment is June 11th.


My "team" (Don, Carlos and Erin) joined me at MDA for the Yervoy and we all hope it works. There is a 10-20% chance of of success and I hope I am one of those lucky ones. It is a big gamble. Such is life. Thank you for all the great supportive messages!

So far the only side effect is headaches and I am having trouble seeing everything clearly including reading words and numbers. Nothing new, haha! Excuse my typing here. The side effects SHOULD clear up but I am not driving right now and my equilibrium is off slightly. If you see me squinting to see your face and focus you will understand its just a slight issue.

Processing this week, we had a lot of time to discuss life. My new motto is "each day I wake up is a gift. I am not dying today - so make the most of it!" Hell yeah. I was discussing with a good friend today that this could be a great gift. I get the opportunity to make a positive impact with the time I have and share as much as I can while enjoying everything I want. This may be viewed as reckless, but I think it is much more of an opportunity to be good.

I am equally worried about Erin and I hope my friends are able to come together for her when needed. She is a beautiful, strong, smart, supportive, caring women who gave up so much to move to Arizona when we met. It was right then. It has always been right. Our goal has always been to play as much as possible between our responsibilities and grow old together. This hasn't changed.


I need to fill you in with some reality. This isn't just skin cancer I have. I look OK from the outside but know that I am stage 4 metastatic melanoma with brain tumors. The harsh reality is 16% of people in my stage don't survive to 5 years. I want you to know this not because I am not giving up. I am far from that. I also don't believe I am a statistics. I am saying this because my time is VERY valuable (and so is your time!!) so I am going to make every second count if it is 12 months or 12 years.  When I hug you know I mean it. When I say thank you, know it is real. Please help me continue this fight. Stay positive and have hope that this or something else will work or someone will find a cure to help all the people who also have or will get melanoma. This is a terrible terminal disease and I am an example that you can do everything right and something genetically can go wrong. My father, sister and I...all have/had melanoma. I will not let caner define me, I am much more than that.

Live, laugh and Love as much as possible!

Thank you for reading. Much love always,
 Jason & Erin

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Tuesday, May 20, 2014

Good news Week 4

**Quick update** Thank you to my awesome support crew! CT body scan yesterday at MDA showed NO NEW BODY CANCER! This is common with melanoma and it returns 70-90% of the time. I am doing everything I can to stop it including the Yervoy which was done yesterday also. Friday is another procedure to clean up the tumor bed site in my brain with some radiation.
 


This week makes my 30th day since diagnosis of stage 4 malignant melanoma cancer. It is challenging to say those words and many days I am still in denial because I feel pretty good, generally have no impact from brain surgery and I look OK from the outside. Most people have no clue how serious this is, my wife and I are still in denial. I hope feeling good continues as I start my first treatment of YERVOY tomorrow and have brain radiation (Gamma Knife) scheduled for Friday at Barrows.

Erin and I had a great weekend playing in San Diego as we are trying to fit as much life in as possible in a short time. What would you do if you knew you had a high probability of dying? How would you spend your time? What would you say to your friends and loved ones? We had 6 hours both directions to discuss life and the possibilities of the "what ifs". What would you say to your young wife about continuing forward? Not comfortable conversations I EVER expected to have to have at 44 years old. Erin and I are an amazing match and I never thought this love existed until we found each other 3+ years ago.

This disease is wicked. You can have no outward symptoms, no warning signs, and it is attacking you internally. We figured out I have had cancer for over a year, ever since I went to the Dr. March 2013 and asked about a lump under my arm. He said after ordering a few tests without anything suspicious, "if you were my son, I wouldn't do anything about it unless it changes". I continued on with life. I trained, competed in the 2013 CrossFit Games and finished 16th in the world...all with cancer. Little did I know I was in trouble. Little did I know I was doing everything RIGHT, went to the Dr., did regular check-ups, physicals, had my skin and lump checked by dermatologists in November, had moles taken off and biopsied, went back to the Dr. to have it looked at AGAIN in March (3rd Dr.) and was told nothing. It took the 4th Dr. to find it. But I was one of the 10% of the population who does not have a primary cancer site. There was NO WAY TO KNOW until it was too late and it spread to my brain. Should I be mad? At who? I am mad at the disease and this mutation that occurred with hopes the Dr's and my body can find a way to keep me alive.

I am still not able to exercise much at all. I am fighting daily depression, doing my best to stay out of the rabbit holes and fight the gut wrenching feeling that the clock is ticking and I cant stop it. The Yerovy treatment over the next 12 weeks is a staggering $120k and may or may not do anything. This is the first treatment option and there are also clinical trials I am looking at including PD-1.

Thank you for all the support, love, messages, company, food, hugs, pictures, cards and donations. This is truly a team sport and I will never be able to thank you for all you have already given.

Stay positive and never give up!
Much Love, Jason & Erin Fine


Friday, May 16, 2014

Day 24 of my WAR

Quick update:

Had my sister in this week to talk and help me out. She is an amazing person if you haven't met her. I cant thank her enough for the time and compassion she gave to me. It was the best gift I have EVER received. Love you.

I am still interviewing and looking for the "right" oncologist who has a positive attitude and will be my quarterback. We are heading back to MD Anderson in Gilbert this morning to give a Dr. another shot. Can't hurt and I have been wrong many times. This is a serious WAR where the rules of action are not defined and there are so many unknowns. The anxiety and emotions of this weighs heavily on my head and quickly rises to the surface when I am asked.

I MUST remain positive that I will be one of the successful survivors of Melanoma. I must believe that it is going to be OK for as long as it is. My sister said something that resonated: "this is treatable but not curable YET so you need to live everyday FULLY." We all do not know how long we will live whether it be from an accident or a terminal disease like cancer, so take advantage of this knowledge and live everyday like you are dying. Love hard, be kind and patient, live in the movement and experience everything. FEEL. These are easy words to say and I do believe I have lived my 44 years doing it mostly, but now with a potentially closing window, I embrace this and think about it often.

Heading to put our toes in the ocean this weekend and get away from the rabbit holes. Cherishing every moment is my goal and seeing a couple sunsets with Erin is something we love to do. 
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Thank you for spending a moment with me and reading my thoughts. Have a fantastic weekend and hug your loved ones a bunch.

Jason

Tuesday, May 13, 2014

Day 21 - Heading for more news with my sister

We are off  to Tucson, AZ today to interview Dr. Canmer, a medical Oncologist with the University of Arizona Cancer Center. This guy comes highly recommended from my sister's Oncologist at the Mayo in Minnesota. Lets see what tricks he has up his sleeve.

It is day 21, just 3 short weeks since initial diagnosis (at the time stage 3b melanoma cancer, then 3 days later to be discovered also in my brain, making it stage 4) of malignant melanoma. The rarest and most deadly skin cancer there is. The odds are terrible for beating this past 5 years and little shows past 10, but we must remain hopeful that they are ale to hold this cancer back somehow. They are "close" to finding a cure. It could happen. We are strong and will not give up!

How is it 2 siblings can get this type of cancer and BOTH Stage 4? Genetics.

It was shocking enough to learn 18 months ago my sister Robyn was diagnosed in a very similar style. He cancer started in her shoulder as a mole in 2009. They removed everything (they thought) and it came back in 2012 as a lump in her armpit and chest. Her cancer has returned multiple times and also progressed to brain tumors (5 in all) over the next 18 months. So we are both now classified with stage 4 melanoma cancer. Not something we ever would have cared to share. But in many ways it can give us strength to share. I am learning through her journey to appreciate EVERYDAY because the unknown is just that. The doom & gloom of melanoma, this silent killer, is just too much to contemplate on a daily basis. I went from the model of health to having a terminal disease in weeks...and never knew it. As I said before, I never missed a skin check or bad mole.

Todays Positives
I am so grateful for my amazing friends and family (this includes all the people who donated to my medical fund who I haven't even met yet).
I love my wife and do not take ANYTHING for granted anymore.
Have cried more in the past 3 weeks than my entire life. Yes, this can be positive.
My sister visiting from MN and sharing her story and knowledge.
I got back to coaching some classes and feel good!
Worked out...well did 20 min on a bike at low intensity.
My view of the world is changing as my window potentially shuts.
My staples are out. I am sleeping better.
I stayed out of the rabbit hole for 95% of yesterday.
Making a bucket list ASAP! What to do? Where to go? Do you drop everything and go? Think about it.

Thank you for caring. Jason & Erin




Friday, May 9, 2014

Jason Fine's WAR Day 17 - Good news and other news - I DID EVERYTHING RIGHT!

So it is 17 days from those words, "you have cancer" and 7 days post brain surgery to remove a 1" tumor. I am well today and almost off of all medications. Vision & balance are returning to normal and I should be back coaching soon, something I miss. I can workout soon. OK, maybe just light AD bike and walk but it is something.

It has been a rough couple of weeks for my wife, my family, my community and friends. We have been pretty emotional not knowing the full prognosis since melanoma is so deadly once it metastasizes and the long-term statistics for survival are not good. Don't read them, I am doing my best to stay away.



Just a few pictures from friends


THANK YOU FOR ALL THE GENEROUS SUPPORT!

The CrossFit community and outreach support from friends, family and people I have never met has been unbelievable. People are bringing food, raising awareness by hosting WODS, asking to help in anyway, rides, love, support and kindness I have never seen before. It is unreal and left me speechless many times. You have been amazingly generous raising funds for future medications and trials that are coming as I face this WAR. One of the main goals of this was increase education and bring additional awareness of melanoma cancer. With the number of Facebook shares and dedication workouts happening this past week, I believe it has helped.

I learned today I am a very unique case in that I didn't have a primary cancer site I ignored. This happens in about 10-20% of all cases. I had yearly skin checks. Had moles removed over the years and biopsied. I did everything right except my sister and I have the genetic marker they believe to set this cancer off. I was proactive and had 3 doctors over a year tell me not to worry about my lump in my armpit. It took me calling the 4th Dr. to get more answers. I DID ALMOST EVERYTHING RIGHT EXCEPT TAKE IT OUT MYSELF.

I learned today from my oncologist to have more hope. I learned I am considered cancer free! AND...I have a 20-25% chance of it NOT returning somewhere in my body or brain. IF it returns, I will have to adjust and deal with the process of getting it out and follow up treatment. This could mean more surgeries, immotherapy, drug therapy or trials. The Dr's treat this cancer to as a chronic disease to extend your life. There is NO CURE YET. So the clock ticks.

Baby Steps and Patience:
#1 - Gamma knife the old tumor bed in my head to kill any remaining cancer cells. Little clean up work.
#2 - Test the genetics of the mutation. This will determine the first treatment plan option compared to other studies of what has worked globally.
#3 - LIVE EVERYDAY LIKE IT IS YOUR LAST AND LOVE FULLY.  Prognosis is similar to an unknown chipper. It is coming. Not sure how long or the details. Be trained the best I can be to handle what task I am given, stay healthy and listen, bite off a little at a time while continuing to look at the entire project, and FINISH STRONG. Enjoy the process. That's it!

Having cancer chasing me like a huge bolder makes me even more determined to be better. Be a better person, friend, brother, son, coach, volunteer & man. I will slow some to enjoy more and take a little more time to show love, patience and compassion. Get use to it. I am a driven person, always have been a little intense at what I love. This is me, but now I have a new perspective. I was surprised when I learned my sister, who is fighting the same cancer explained she is happier now than ever. WHAT? I get it now. Ill explain another time.

Final note: there was talk today of clinical trials that are out of state which would require relocating. There was also talk of immunotherapy or chemo which sounds BRUTAL. My Dr. said it can take the toughest person down being sick the entire year. There was talk about doing no harm...doing nothing and waiting for it to return...if it does. The unknown is huge.

AGAIN, THANK YOU FOR THE SUPPORT AND LOVE.

Jason & Erin Fine




Tuesday, May 6, 2014

Day 13 Update - My war on Melanoma Cancer

5/6/14

Day 13 update:

2 weeks ago I finished 37th in the world in the CrossFit Open (M40-44)... 3 days later I am in surgery being told I have cancer. It's has been just 13 days since I was first diagnosed with malignant melanoma in axillary lymph nodes under my left arm and just 4 days since surgery to remove a 1" brain tumor in my occipital lobe.

 
This comes as a complete shock since I really had no external warning signs and have always been checked by dermatologists annually without issue. But now it is loose in my body. This is exactly what my sister has been fighting for 18 months now. Genetics are a bitch and we were exposed to a lot of sun in the -SPF days.

My next step is to WAIT to heal more before my next Gamma Knife procedure on May 23rd and radiation under my left arm sometime. I also have to pick a primary Medical Oncologist to get a plan of attack. This is a time sensitive matter to get going to stop any other spread. I still have at least a year of chemo/immune therapy.

Know I am a positive person and have hope but still may need a shoulder here and there coping with all the life changes since fitness and CrossFit has been such an important part of my life. Stay strong! I was released from the hospital in a record 23 hours after brain surgery due to my great health.

I will fight this war, we are strong and never give up.

Thank you for ALL the community support, food, donations, dedication workouts, visits, texts, pictures, phone calls and best...love.

With Love,
Jason & Erin Fine

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